Is there anyone who knows about this rare tumor interested in exchanging information?
I can't believe I've finally found someone else. You realize we are only 4% of cancers ever? I'm 4 years in remission and would love to talk about whatever you'd like. I have only my own personal experiences to share for the doctors themselves know little. I will tell you whatever I can. Peace and love, Bridget
Gidge, Sorry I didn't see your message until today. I had given up on finding someone with the same problem. I would love to talk and exchange info, personal experiences, etc. I hope you see this message! All the best, Tere
Bridget, My husband has this very same diagnoses and is currently experiencing shrinkage of tumors due to his participation in a study of a radionuclide treatment he received in Rotterdam NL last year. You are right, doctors we have seen are very upfront and tell us that we are teaching them about this disease. I too would be glad to exchange information as to what worked for us. Take care
I have been diagnosed with a malignant glomus tumor in my left forearm. I understand it has been 8 yrs. But I'm really trying to find out answers. It seems to only be about 15-20 people with this type. I have had it removed and another portion in the same arm has showed up, and the doctor says he has never seen anything like this. And as you may know there is not much out there to compare. I'm sorry i am bothering you and you may never read this, but i am hoping that God is pointing me in a direction where I can get some answers. My e-mail is email@example.com God bless you and have a great day.
I recently was just diagnosed with the same thing, a malignant glomus tumor. Mine was on my foot. I had thought it was a ganglion cyst and had it removed. The doc said he hadn't seen anything like it and sent it off to the pathologist. 2 weeks later the report came back with the malignant glomus tumor diagnosis. From there, I went to Northwestern in Chicago. I had another tumor grow within 2 weeks of the 1st one being removed (but again, it was by a foot doc, not an oncologist and we thought it was a cyst).
Since then, I have had all the soft tissue surrounding my tumor removed down to the bone on my foot. They had plastic surgeons take tissue and a vein and make a "foot flap" to replace where the tumor had been removed. It was an area from my pinky toe up almost to my ankle bone. Luckily the cancer had not reached my bone, so I am grateful I got to keep most my foot, and as I heal up I will be able to walk again (surgery was 3 weeks ago).
Unfortunately, since I had cancer in my foot we did a CT scan on my chest to check the lungs. We found 3 nodes there. So, at same time as my foot procedure, they removed a node to check it. It is also glomus tumor there. The doctor said it is extremely rare, maybe 20 or so cases. So, as soon as my foot flap heals enough, I will undergo radiation on my foot to try to prevent any more tumors from growing (doc said still saw some cells on outlying areas he removed that were cancerous) and have to do chemo for my lungs. I will be meeting next week with a general oncologist since the other doc is an orthopedic oncologist. So I hope this gives you some idea of what to expect. You should have an MRI to check your arm so see how far its spread in your arm and a CT scan on your chest because apparently that is the next place it seems to travel.
I also had a malignant glomus tumor in the tonar tunnel of my foot 2 years ago. I also had a rare form of lung cancer at the same time. All of this has been treated, but now I have new growths in my lung. I was wondering how those who are dealing with the spread of glomus tumors are doing. I think I just need some extra encouragement today as I deal with the latest bad new.
Moving on to another type of treatment as my lung nodes are growing again. Went through 8 cycles of doxorubicin and a clinical trial drug that shrunk the nodes while i was on the chemo. Now, 12 weeks off of the chemo, my nodes are growing again and i am going to be put on a gem/tax chemo treatment and see how that works.
Hope your fight is going well.
My foot has been ok so far with no additional tumors growing since surgery. Just not able to get rid of all the nodes that have spread to my lungs. Dec 5th will mark 1 year since i was diagnosed with the glomus tumor and january was my foot surgery to remove it and check lung nodes to see if they were same thing. Doing my best to stay positive and keep those around me positive as well. Much prefer laughter to tears, so keep your head up and do the same. Good luck.
I suppose there are different kinds of malignant glomus tumors. What I started with was a glomus jugulare tumor which is rare (about 2%) and those tumors are usually benign, not cancer, and start in the head. Because mine has metastasized it is now called a malignant paraganglioma. And I am rare among the rare: sometimes my tumors go dormant, just go to sleep, no growth, no change and twice the two biggest ones shrank, all by themselves and with no treatment, no nothing. I was first diagnosed in 1987 and have lots of tumors, mostly on my bones but also in the lungs (numerous tiny ones.
I know the cousin of the glomus jugulare tumor is the carotid body tumor, around neck area. The thing is that apparently malignant paraganglioma covers a lot. I thought it was just the glomus jugulare and the carotid body tumors but I've seen post from people with malignant paraganglioma where the tumor is in the abdomen but so far I have never seen one where the tumor is in the arm or foot. Maybe all glomus tumors are rare and that is why it is hard to find information. I know that for my type of original tumor there was little information when I was diagnosed and also many doctors didn't know what it was. These days there seems to be more doctors who know about this but are they really well informed?
What do you think?